Today marks one year since Dylan was diagnosed with DIPG. One year. I honestly didn’t think she’d still be here when we were diagnosed last August. I remember last August 7th and 8th so vividly. Going to the eye doctor to find out why Dylan’s lazy eye seemed to be getting worse. The eye doctor saying “let’s talk” after looking into Dylan’s eyes and seeing something compressing the optic nerves. Going over to the hospital and getting in the MRI machine with Dylan. I remember how calm and brave she was, while I couldn’t control my emotions. I remember being so worried about what it could be, and the reality of her diagnosis being much worse than anything we could have imagined. I remember the oncologist crying as she delivered the news to us, that yes, it did appear to be DIPG.
That day seems both like yesterday and light years ago. Our life has changed so dramatically since then. I’ve learned that despite my heart aching on a daily basis, I am stronger than I ever thought I could be. I’ve learned that Jeff is relentless in his search for new treatments. I’ve learned that love is stronger than anything.
We have a hard time remembering the old Dylan. She has been through so much and DIPG has taken so much from her. She hasn’t walked on her own since last fall. She speaks slower now than she used to and her eyes never corrected. Despite all of that, she remains the smart, sassy girl we’ve always known. Up until recently, she’s never complained about any of this. Seeing the old pictures and videos of her running, riding her bike and climbing literally rip my heart out. Being around healthy children her age can be hard, and I often long for our previous life.
We’ve met the most amazing people throughout this journey. People we wish we never knew, just as they wish they didn’t know us. DIPG families are true warriors. I admire all the parents currently battling and those who have lost children to DIPG. The families that continue to battle for a cure after the loss of a child are my heroes.
This battle is exhausting. We’re constantly stressed and haggard. The fight has definitely taken a physical and emotional toll on all of us. It’s like living in limbo and watching the world move forward without you. But we won’t give up.
We appreciate the love, kindness and generosity from family, friends and strangers. I also appreciate all the people who tirelessly check in with me. My tribe of friends are saints, and I apologize that I haven’t been the greatest friend over the last year. I struggle in conversation and have a low tolerance for petty complaints. I wish people could understand how I feel each day without ever having to experience what we’re going through. (that whole notion of being kind to others, as you don’t know what kind of battle they’re fighting? So true) I am thankful for a great counselor and CBD products to alleviate anxiety and depression. I’ve been grieving since last August, and while I think I’ve hit a certain level of acceptance, it will never be ok.
Sadly, we know many DIPG kids are not given as much time as Dylan has had. While we’ve learned to treasure each day and make the most memories we can, it is not enough. To feel like each day is a gift is not enough for me. It sickens me that there is a short time line on my daughter’s life. More research and funding for pediatric cancer is needed NOW. Jeff and I plan to start a DIPG foundation in the near future. We plan to continue the fight and we will not stop.
*Dylan is currently doing ok – we’ve seen a positive response from secondary radiation and we’re working on building her strength back. The hope and goal continues to be for her to participate in the CAR-T trial this fall in Seattle. We appreciate your love and support so much.*
